bbauska wrote:The doctor offered hope. Hope for a child who is dying. Thank you for your compassion toward the grieving parents.

Alas, this is about the baby, and while I do have a lot of sympathy for the parents, I think that their grief could be clouding their judgement. Hope is all very well, but false hope can be damaging.

This has moved on. The European Court of Human Rights are now involved. The question now is whether to continue to intervene or to withdraw some of the care and allow him to die. Currently the court have said that he must me kept alive until they can rule.

Given the child's condition I don't think it is going to make any difference whether the State allows the parents to try the experimental treatment or not. I also don't think the child would be harmed (at least not significantly so) if the parents were allowed to get treatment for the child. But coming up with clear standards as to when the state can take that decision out of the parent's hands is important, because other cases may be closer. It seems to me you would want to give parents broad latitude in making these decisions. You wouldn't want a judge to decide well "I think this is the reasonable treatment for the child and if the parents don't do it then they lose the right to make the call." Reasonable minds are going to disagree. If the left side of the graph is clearly unreasonable medical treatment and the right side of the graph is clearly reasonable medical treatment...then parents get the middle gray area with varying degrees of reasonableness vs unreasonableness. It's not for a judge to decide what he/she thinks is the best course of action for the child (as long as the parents are fit parents), but only whether they find the parents' decision to be clearly unreasonable. Of course, what is clearly unreasonable medical treatment? No medical support for it, low probability of success, undue risk of harm, etc. Something like that.

Charlie Gard, God bless him, is the warning sign about socialized medicine. Oh, it's not the medical care. It's not the waiting lines.

Nope, the warning is this: the State has control over life and death situations:

Note that there was no disagreement between the parents over the course of care they wanted for Charlie. The two of them have lived at the hospital with their baby, and have been equally united in their desire to try anything to save his life. This is not a dispute between relatives over who should have control over care (as was the issue in the Terri Schiavo case) but whether the state or the parents should have the final say. In a single-payer system such as NHS, the courts have clearly ruled that the state has more standing on whether to allow someone to die than the person or his/her nearest relations. And now, the state — through its socialized-medicine providers — refuse to even allow the death to take place under the circumstances desired by the family.

While this case does not directly relate to euthanasia laws, there is nonetheless a cultural and moral link to European embrace of utilitarian policies on life. In this case, neither the patient nor the family wanted an end to a life, but the state ruled that “compassion” demanded the withdrawal of life support even absent the need to conserve resources for care. Critics have long warned that the embrace of euthanasia would eventually transform it from a choice to a duty, and that certainly seems to be what happened in the tragic case of Charlie Gard.

It is not about socialised medicine. It is about medical ethics, balancing the rights of parents with those of their child, and the medical opinion.

A similar case is that of Terri Schiavo. That was again about someone who was unable to express their preferences, with debate over who should decide on the best course of action, and the problem of one side having medical evidence against the other having hope.

danivon wrote:It is not about socialised medicine. It is about medical ethics, balancing the rights of parents with those of their child, and the medical opinion.

A similar case is that of Terri Schiavo. That was again about someone who was unable to express their preferences, with debate over who should decide on the best course of action, and the problem of one side having medical evidence against the other having hope.

And that was also not a result of the US healthcare system.

I guess the difference, for me, is that Charlie's parents are, effectively, being sacked by the State in terms of decision-making. Why? Because Charlie might suffer if he undergoes the procedure.

Two responses:

1. I'm *sure* the State cares more about Charlie than his parents. 2. What does the State suppose Charlie is doing now if he's not suffering? Honestly, the State comes off with all the compassion of a serial murderer in this situation. If the parents can raise the money to seek other treatment, what right does the State have to countermand them? How is it in Charlie's best interests to simply die? And, to what extreme is the State willing to go to make it happen?

Doctor Fate wrote:. 2. What does the State suppose Charlie is doing now if he's not suffering? Honestly, the State comes off with all the compassion of a serial murderer in this situation. If the parents can raise the money to seek other treatment, what right does the State have to countermand them? How is it in Charlie's best interests to simply die? And, to what extreme is the State willing to go to make it happen?

He is suffering. Every day he remains alive, he will be in pain. And not be able to see. Or communicate.

There are three paths.

1. Keep him as he is, alive but in decline, on tubes and machines until he gives out. 2. Remove intervention and he will die quickly 3. Send him to the US, for this treatment which will at best slow the decline but not affect his brain and organ damage. See (1)

Doctor Fate wrote:. 2. What does the State suppose Charlie is doing now if he's not suffering? Honestly, the State comes off with all the compassion of a serial murderer in this situation. If the parents can raise the money to seek other treatment, what right does the State have to countermand them? How is it in Charlie's best interests to simply die? And, to what extreme is the State willing to go to make it happen?

He is suffering. Every day he remains alive, he will be in pain. And not be able to see. Or communicate.

There are three paths.

1. Keep him as he is, alive but in decline, on tubes and machines until he gives out. 2. Remove intervention and he will die quickly 3. Send him to the US, for this treatment which will at best slow the decline but not affect his brain and organ damage. See (1)

For me, prolonging his pain is cruel.

#3 is under debate.

In any event, honestly, how can anyone believe the parents care less than the State? Or, that the State has the child's best interests at heart when their interpretation of "best interests" is "death?"

I understand what you're saying. However, I'm mindful of two things:

1. Doctors "know" many things until they find out they were wrong.

2. Hope is better than hopeless. The State has no interest in hope. There is no upside in it for the State. Let's say a "miracle" takes place and Charlie gets better and even "normal." Who loses? The State. The doctors were wrong and the State was going to kill Charlie. It is in the State's interest for Charlie to die quickly.

US doctor from Columbia says there is a ten percent chance chance that there could be a meaningful clinical improvement and that a study of nine children with similar but not nearly as severe neurologcal diseases revealed that there had beeen a 56% percent success rate. He also said the scans did not reveal irreversible brain damage.

A US doctor from Columbia Medical School--not a quack--says there is a ten percent chance of meaningful improvement? Good enough for me.

freeman3 wrote:US doctor from Columbia says there is a ten percent chance chance that there could be a meaningful clinical improvement and that a study of nine children with similar but not nearly as severe neurologcal diseases revealed that there had beeen a 56% percent success rate. He also said the scans did not reveal irreversible brain damage.

A US doctor from Columbia Medical School--not a quack--says there is a ten percent chance of meaningful improvement? Good enough for me.

I have a problem with the suggestion that the State's intention is to kill the baby. All of medical ethics boils down to intentionality. The State's intention is not to kill. It is to remove extraordinary means of keeping him alive. Obviously this will result in his death, but that is quite far from "intending to kill him." To suggest such is an oversimplification of the situation and a characterization of the State's position. And it isn't fair to the State.

That said, this is the parents' call. Parents trump all, especially when there is still hope for life. As for the baby's suffering, there are medicines that may mitigate that, even for new borns. And Fate's point that sometimes the medical community gets it wrong is spot on. Happens every day.

The parents' desire that their child be allowed to live goes far beyond instinct and is quite far from unreasonable. Love is truly amazing. If the parents desire is to love their child every step of the way, no matter the child's quality of life, then so be it. As long as any physical suffering can be mitigated for the baby, this makes perfect sense to me. The medical community is equipped with technology to curtail suffering, even for infants. That's their raison d'etre. Extending their reach beyond this role or the State extending its reach beyond this role is unacceptable. As a community, we need to be that radical when it comes to the preservation of life.

At the same time I must admit, for those who adhere to Christianity, I do wonder who it is we think we are preventing a brother or sister from by discontinuing extraordinary means of keeping someone alive.

Is it the Author of Life, God, the very one who is more than aware of the parents' devotion to their child, who ultimately was responsible for this child's life, who now somehow wants to test all of the players to see who faithfully respects life and who will not? The same God who is more than aware of the myriad of perspectives on the situation including intentionality of all involved? What a strange God God must be if this is in fact the take.

On the contrary, it seems to me that if you are capable of blowing an entire universe into existence, you can handle a situation involving loving parents who quite reluctantly allow their child to return to you, and who mitigate their child's suffering along that journey as much as possible. If you can figure out the complexities of bringing about the physics needed for say, Jupiter or earth, I think you can get loving parents whose true intentions all along were to see their child live, though not under extraordinary means for an unknown duration.

This same God provides us with brilliant minds who set themselves to science so that we can live longer, more productive lives. There is no contradiction.

You dont like the characterization I made once, out of several similar characterizations, fine. However, the State is trying to prevent the parents from taking the only known avenue of hope. Call it whatever you like, but it's faux compassion--at best. The State claims to have more of an interest in Charlie's good than his parents. We agree this is rubbish--at least I think we do.

We do agree Fate but we part company on this notion that the nebulous State is out for control so that it can be the end all be all on these types of issues.

We're talking about a situation in the UK right? Not some backward developing rogue nation. So behind every State there are people. And I just cannot bring myself to believe that the folks involved in this decision are attempting to control who lives and who dies. I would give them the benefit of the doubt that whoever "they" are, they are concerned about all of the various stakeholders, especially the baby and his parents.

Again, their intention is not to kill or take life. Their decision is to remove the extraordinary means which they know will indirectly contribute to the baby's death. That's a far cry from killing someone. It's an important distinction to make I think. Barring killing someone out of self defense, killing is always and everywhere wrong in my opinion, even in end of life situations.

I believe this decision on their parts is a mistake given the context of all the other factors I outlined above. I ALWAYS say its better to err on the side of life, especially when there is a chance, though be it remote, for a better quality of life, or better, a chance to experience love, even if the person in question can not "know" they are loved or physically feel loved. I could go on about the power of human touch but that's for another time.

By the way, that same God has gifted us with faith. That baby will be fine on his return to God. It's up to us to safeguard his every chance at life and to mitigate his suffering when possible. Great good can come from loving evening the most desperate of mentally and physically disabled persons, or desperately sick individuals.

Allow me to direct you to one of my living heroes who is getting up there in age. A Canadien philosopher and former military man who has altered the course of human history through his profound work.

Jean Vanier is the founder of L'Arche. He has spoken and written beautifully about the privilege of being given the opportunity to love even those who seemingly have no point in living.

His communities, called L'Arche, now exist all over the world. These are communities where so called normal people like you and I live in community with those who are mentally disabled and sometimes even profoundly physically and mentally disabled persons. Those who have lived in L'Arche communities report life altering experiences. People who entered with plans for a life trajectory full of success and promise, often end up tearing those plans to pieces as their compasses are overhauled on account of their experience. And all from the opportunity to love and be in community with those who many would deem not worth the effort.

Check him out Fate. I know you will dig this guy if you haven't heard of him already. His philosophy flies in the face of the kind of worldly reasoning being thrown about to justify belittling the value of human life at any and all stages.

His is a challenging and seemingly impossible message to consider at times. Only truly understood through experience, the great governor of the heart, and not the intellect.

Dag wrote:Their decision is to remove the extraordinary means which they know will indirectly contribute to the baby's death.

Sorry, but you have this backward.

The government wants to end the parents' pursuit of the only hope Charlie has, however dim. The government wants to remove all hope. Now, it may not overtly want to "kill" him, but there is NO doubt about the result if the government prevails.

Well, it is back in the courts again today to look at new evidence. I think that is right - if there is new medical evidence, and the doctor from the States can show a better chance of some improvement, then the decision should be reconsidered.